Pale and Waiting

Had pale yellow, clay-like stool.

Called surgeon and asked 'is this a thing that matters?'

They ordered STAT blood work.

But then weekend started so nothing will be done.

I did finally realize I had access to a bunch of lab results in the online portal. I reviewed them all aaaaaand...I'm anemic.

8.0 hemoglobin
22% hematocrit

So that explains why I've been panting like a fucking dog for the last 15 days.

I didn't think I'd bled enough to be anemic. They touted how little bleeding I'd had, so I didn't even think about anemia (although I should've known better, especially with this surgical team).

At least I anticipated this a bit and had stocked up on the iron supplements I like.

I've started slamming back iron like it's candy and am anxiously awaiting for the 5-7 day mark when it will finally start to have an impact.

Meanwhile, the 5 day steroid burst ended, buuuuuut the asthma flare didn't break. My lungs are stuck. I hope improvements in the anemia will correspond to improvements in the asthma, but we'll see.  I don't know what else to do. :(

Going Backwards

Lungs got worse. Developed a cough. Had a low grade fever here and there for a bit.

I fought back hard with the nebulizer and all my inhalers, but when the hubby lit some matches it was instant Game Over for me.

It was either steroids or the ER where they would go 'huh, what do you mean you're not supposed to take steroids?' I did not have the breath to deal with that.

So here I am on a 5 day burst.

Good thing I did it, as after the matches, I got hit with diesel fumes from the tree trimming crew. (We have a massive, ancient oak tree that needed pruning...at exactly the wrong time for my lungs).

I called the pulmo, who as per usual, has no time to see me, but did eventually relay that they didn't want me on steroids either due to their impact on wound healing.

But then had nothing to offer to help.

I've done what research I can. My sense is steroids can end well, they don't always fubar wounds up. I'm navigating my risks as best I can with a surgeon who does not give one shit and a pulmo who can never absorb emergencies and any ER visits would be a hot mess of WTF.

The scary part is tomorrow is day 5, but my lungs are still crap so...then what?

In Which I Try to Explain Asthma to Liver Surgeons

I've had something like 12+ doctors appointments since landing in the ER this past October. Each time, I disclosed my medications and health history.

Same for the presurgical consult.

I thought when I said things like, "I have asthma. I'm on Symbicort daily and pulmicort, pro air, albuterol solution and prednisone as needed' that they understood I had asthma.

Not Kim Kardashian asthma that expresses as a cute little cough and comes with a custom inhaler cover to match your purse and shoes.

No, I don't have that asthma. I have jihadist, kamikaze asthma that has declared me an enemy who must die.

My asthma, when activated, does not play.

The blessing and the curse is that moooost of the time, the asthma is controlled. So everyone gets complacent and tends to dismiss my intense interest in staying on top of it.  (Except my pulmo because she's seen it in action.)

But you don't get a never ending prescription for prednisone 5 day bursts because you can breathe just fine, you know?

So after the liver resection, my lung partially collapsed and the asthma came out to play and I didn't see good O2 sats for days. Unfortunately, no one really noticed. On Day 2 I woke up enough to go 'gee, I'm undermedicated for this' and started demanding meds in an effort to find relief.

(They were treating me with oxygen and one puff of Advair and nothing else.)

The 'we are bros, bro' residents told me they were going to discharge me with shit breathing and that I couldn't take any steroids for my lungs.

And I freaked.

Seriously? You are going to discharge me with O2 in the 80s and tell me I can't use my 'asthma action plan'?

What?

I kept asking them about it. Trying to get them to make the connection that maaaaaybe it's not the smartest thing to ditch a patient at home when they aren't breathing so great. Maaaaybe the bro code could include figuring something out so I don't bounce right back into the hospital.

However, I was in a lot of pain, my O2 was not great and talking was very difficult. Meaning, my ability to express myself was not at 100%. I don't think I was very effective and the bro residents really were not interested.

FINALLY, my family got one of the halfway decent residents in my room and I tried to explain again.

"If I can't breathe now, what do I do if it gets worse when I go home?"

They had no answer. I brought up prednisone.

"No. No. No prednisone. We're not giving you any steroids."

"I don't need you to give me steroids. I have prednisone at home."

You should have seen the look on the resident's face. Like, he was shocked. Utterly shocked to learn I had steroids to use at my discretion.

Somehow that translated. The light bulb went off. "Ooooh you have asthma." I don't get why this was such a shock to any of them, but there it is.

I then pushed for a pulmo consult, which was too late in the game to help me much. I'd already gotten the meds they could have prescribed and lined up the RTs for nebulizer treatments.

I resent that I had to work that hard on my care. I was exhausted, in pain, and struggling to breathe, and I had to argue and argue and OMG argue for care. I can't believe they didn't pull in pulmo when the lung collapsed, but apparently that is just not done. It was very disappointing.

Ultimately, nothing was settled. I was sent home with no plan for my breathing and was left to manage it on my own. I don't know why a surgeon would bother to cut a patient if they weren't going to ensure something else didn't ruin their work down the line, but here we are.

Liver Resection Recovery 10 Days Out

1. Finally off narcotic pain meds and on Advil. I have pain but it's below a 5. When they sent me home I was still at an 8/9. My abdominal wall does not like to be cut. For some reason, the pain is always excruciating for me.

2.  I can poop! Woo! I took the Colace they prescribed, and as time went on (and on) I added in magnesium and then Senekot.

3. Lungs still dodgy. Since yesterday, I can't take deep breaths. I feel like I'm 'pinned down' on the right side. Asthma is mildly flared. I keep yawning and am still short of breath on activity and with talking.

4. Walked 22 minutes yesterday. A little over a mile. Am doing some stairs as well. With the lungs, I kind of walk a bit like the Hunchback of Notre Dame. Shoulders up to my ears and bent over. Sometimes I have to stop and put my hands on my knees to release the pressure on my lungs and abdomen and just catch my breath. Working on building up from here.

5. I can finally eat! But not a lot. I still have 29 other tumors, 28 of which are in my liver and they are not totally inert. My liver definitely has a hard line when it comes to food. So I'm still dancing around that.

6.  I have a divot on my back that is somehow related to all this. I don't know how though. It hurts and throbs and sometimes itches. I started with ice packs and have switched to hot packs trying to help it heal.

7.I am so sick of sleeping on the couch. Ugh. But our 80lb rescue dog--who is still fairly new to our family--doesn't understand he can't walk on my stomach. For the time being, I have to stay quarantined from his rather aggressive love bug tendencies. He snuggles like an anvil on the head!

The Other Side

It's 2:51 am and I've just finished plucking my eyebrows. The things you do to distract yourself from pain.

Now I'm here typing, because I can't stand any more.

I had the liver resection surgery. It was a clusterfuck. My asthma did not behave, my lung partially collapsed and my body tried hard to never breathe again after anesthesia. It's been very painful...I continue to find opiates largely ineffective and doses were limited due to the 'bad reaction to anesthesia'. 

If I'd known how painful and how little anyone would care about the pain, I'm not sure I would have done it.

I had an incompetent resident, who forgot to BE a doctor and instead became upset and increasingly unprofessional in both technique and behavior. That genius trashed my hand and caused me to injure my abdominal wall in a near fall.

Other residents...I don't know quite how to describe it...kind of like they lost any reverence for what they do. I found them disrespectful, not to me per se, more to the heart and soul of medicine.  Like, are you here to be a cool 'bro or serve the greater good? A small herd of them showed up every day. There was a lot of ego posturing at the foot of my bed. It was weird and juvenile. They needed more supervision.

And yet other residents were fine. Unfortunately, I didn't get them very often.

Group think tried to ignore the asthma and tell me I had sleep apnea. Even though my O2 would drop to 80 during the day while I was awake. I had to fight like hell to get the asthma taken care of. I don't even know why. It's not rocket science.

As I became more with it, I demanded more meds and got pulmo involved...too late though to really help. However, pulmo and I were on the same page. I wasn't crazy, but after days of being left to fight for every breath, I was starting to think I was.

I haven't eaten for 7 days. I can't eat. I try and my body very clearly says NO. I feed a lot of people my Jello. lol Two bites and, "Here, you eat it. I'm done."  

But I'm hungry. I spend a lot of time noticing all the random food that pops up around me. I've watched every recipe that has come across my Facebook feed with an intensity normally only seen in dogs. 

I'm up most nights due to the pain. I just stare at the ceiling, breathe around the pain as best I can, and try to let the drone of the TV lull me to sleep, but it's a long slow process. Sometimes I don't have the patience for it.

At the moment, I've realized the nurse didn't remove the stitches for my arterial line (what is that? A Pic? A central line? I'm not sure of the term). Mostly the nurses were fantastic. One even gave me a big (and gentle!) hug and then came to say hi when she was on the floor but assigned elsewhere.

The reality was, I was in so much pain and struggling so hard to breathe, I was not a high maintenance patient. I chased sleep constantly, hoping to sleep my way through the worst of it and save up some energy to deal with the sleep apnea cult of bullshit.

If My Liver Is Up, I'm Up

I'm having issues replying to comments. I've been responding and then nothing shows up. This extends across the Blogger platform as well. I think I know why this is happening, but the fix doesn't reside with me and I doubt it will resolve any time soon.

So.

1. A. P. Jonas...so sorry to hear about your mother. Thanks for all your comments.

2. Anonymous who asked about the vitamins...this is the company I use: https://www.consumerlab.com/

***

It's 4:30 am and I can't sleep. My liver is unhappy.

Thanksgiving went well. I ate more than I thought I would, which was exciting. Of course, my liver didn't like that. There's quite a bit of negative feedback from my liver over what and/or how much I eat--I can't quite make the distinction right now.

Is it the fat or the carbs or the volume or ??? Either way, I'm now back to fasting most of the day and struggling with pain that is worse at night.

The bummer is, I didn't even eat that much! I had hoped I balanced it all, but nope.

The one night, I had intense pain around the bleeding adenoma and wondered if I would end up in the ER again. Fortunately, it calmed down and went from increasingly acute to the more typical dull throb.

I increased my exercise, walking and dancing/doing aerobics for more than an hour for several days around the holiday, but it didn't seem to help.

I've also been running stairs, trying to increase my fitness level. To be clear, it's not a lot of stairs, I don't seem to be making many fitness gains over here, but I'm certainly challenging my heart and lungs which is the goal.

Some days, I can haul ass on the exercise front. Other days, I feel like I'm trying to go upstream against the battering ram of Niagara Falls.

Aside from exercise, I've been trying to get food lined up for the recovery period. There's chicken soup already in the freezer. Plus, I've been making almond flax cranberry pumpkin bread. If that doesn't make me poop after surgery, I don't know what will. Lol.

I'm also juicing as often as I can, trying to increase nutrients.

I'm worrying about the adrenal adenoma as well. I'm told the adenomas are almost like plugs. They actually insert into and stretch the liver. They are having a marked impact on how I feel as a result. My liver has to work around all 30 or so adenomas. I imagine this is why eating has such a negative feedback loop. Capacity is quite limited and I exceed it at my own risk.

So, extrapolating that information, what's the adenoma doing to my adrenal gland? Is it an invasive plug as well? How does it impact the function of the adrenal gland?

Why doesn't anyone think about that?

I don't believe I've had one blood test that would reveal an issue. No one has looked at my cortisol or anything else adrenal.

Although, if my liver blood work is normal, the adrenal stuff might be as well. My body specializes in that kind of confusion. However, I feel so much strain in my liver that I can prove it's quite possible to test as normal and still have something terribly wrong.

And yet they don't want to stress dose me. SMH. I'm not that brave. This is something I'm going to be bleating about pre-op, which I'm sure will make everyone so happy, but if I don't say it, no one else will. I don't think it's a bad question either. Especially as I have some discomfort in the vicinity of the adrenal gland.

Lastly, the hospital sent me educational videos to watch. One of which was basically, '11 Ways You'll Die from Anesthesia'. Sheesh. I've never had such a dire spin on the risks of surgery. Just what I needed in my head space. Thanks so much.

No wonder I can't sleep!

Yay Delay

My surgery was postponed, and I'm pathetically excited about being able to take my vitamins and any medication I want.

The second I had to stop the different pills I take, I was attacked by allergies. Great. Just when I needed some Claritin D (just Claritin doesn't work for me) I couldn't take it.

So I can finally get relief from the horrible sneezing, itching and congestion. OMG. Yassss. There IS a God and she doesn't want my head to fly off from sneezing.

And vitamins make a big difference for me. So I can tell when I'm not taking them.

(I always research the vitamins I take. Including a paid subscription to a service that does purity testing and keeps tabs on medical studies and information about different supplements. I check drug interactions as well. Because yes, I am that weird. Although I like to think of it as being responsible and not stupid. Tomato, tomahto.)

So yay delay.